Second article about my family in the Courier Newspaper. Original blog date Oct. 1, 2009

Second article about my family in the Courier Newspaper

Whenever I step foot into a hospital to photograph an assignment, a flood of memories overwhelm me. I'm reminded of visiting my father in the hospital as he was losing his battle with lung cancer. Maybe it is the smell of disinfectant that hits me. Maybe it's the incessant sound the medical monitors give off. Or it could be the movement of strangers circling around me at such a vulnerable state, which create beads of sweat on my forehead. I told myself I would try to steer clear of hospitals after my father passed. They make me nervous. Even though they are meant to be recovery zones, they are a symbol of loss to me.

A display of sheer hope by Kelly Whistler, of St. Charles, got me through this one.

I first met the St. Charles woman and her husband Ken — along with, and their four children — when former staff writer Charity Bonner and I followed a lead given to us by Maggie Dempsey, the homeless liaison for Elgin School District U46. We were told we were meeting a family in dire need of a miracle. I was not sure that walking into their lives would be a good move for me.

» Click to enlarge image

Kelly Whistler holds her 3 month-old daughter Kayli in her arms at their home in St. Charles. Kayli was born with a chromosomal defect called Trisomy 18, also known as Edwards syndrome. The condition has given Kayli a Ventricular Septal defect and an Atrial Septal defect, which affect her heart. This causes her to work harder having her heart pump faster for needed oxygen and blood circulation. Kayli has been on Hospice since her birth but her significant weight gain has given confidence to doctors who aim to operate on her heart at Children's Memorial Hospital in August 2009.
(Marina Makropoulos/Staff Photographer)

RELATED STORIES
• Video: Walking with the Whistlers

How to help
If you would like to help the Whistler family, send checks or donations to:

Loving Life Fund

c/o Kelly Whistler

Associated Bank

300N. McLean Blvd.

South Elgin, IL 60177

If you would like to make a donation in person, ask to speak to Jeff Garcia.

If you would like more information on trisomy 18, please visit www.trisomy18.org.
This is a family of six that laughs like you laugh. They play like you and your children play. But this family's burdened with severe medical problems. Their medical bills keep stacking up the longer their children survive. But that pile of debt is overshadowed by what really matters — keeping their kids alive.

The four kids, Steve, 16; Jacob, 9; Nicholas, 3; and Kayli, 5 months, all were born with rare medical problems. Kayli and Jacob may lose their lives to their birth illnesses.

But this is not the crux of the story.

This is about a family prevailing over those odds. When The Courier-News first published their tale, Rob was unemployed and Kelly hadn't worked for some time. Temporary financial relief opened up for Rob shortly after we met and I found myself spending more time with Kelly. I watched her be a champion for her children one day at a time. Uncertainty looming over their young lives.

Steve is allergic to both medications that would have cured Methicillin-resistant Staphylococcus aureus (MRSA), the infection he contracted after having back surgery for degenerative disc disease at age 14.

Almost no medical research exists for Jacobs's esophageal problem. He also exhibits severe ADHD and sensory integration dysfunction, which makes him feel no pain where pain should be felt.

Nicholas' brain tumor has abnormalities new to the medical field.

Young Kayli suffers from a chromosome disorder called trisomy 18. The diagnosis is not highly studied and there is a slim rate of survival — with most victims dying before their first birthday.

Kelly is faced with their medical conditions every day, but she wouldn't change her life for the world. She says she's learned a great deal from her children. The Whistlers' have accepted their role as parents of four children with rare diseases and that's the story I hoped to share.

The storm has calmed for Steve, but it hasn't for Nicolas. The little boy gets tested every three months to monitor the growth of his now stagnant brain tumors. Every day Kayli lives is a blessing. Despite the circus of medical activity surrounding them, they continue to be who they are — kids. When you walk through their front door you see just that — an impromptu chase through the living room, a flash of a smile from behind a pillow and toys scurrying by a coffee table.

I do want to thank our readers who sent the Whistlers compassionate letters and donations when we first published their story. Never underestimate the power of a handwritten note. Those warm prayers were a source of strength for Kelly. And the money helped the family stay out of a homeless shelter, which would have been devastating to Kayli's immune system.

If you have a chance, I urge you to hear Kelly's story firsthand in the audio slide show posted with this story. Sharing this story may help other families faced with these circumstances

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Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥